Diabetes Care from Parent to Child: Passing the Torch of Care

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Transitioning care from parent to child can be a stressful time for families with diabetes – six strategies on how to reduce the burden

Transitioning from my parents being in charge of my diabetes to assuming full care myself didn’t happen overnight. It was a long course with small milestones in pursuit of crossing some kind of “hey, now it’s yours!” finish line. After spending a week in the hospital learning the “diabetes ropes,” my parents and I were sent home to live with this disease.

When I was diagnosed at the age of seven, my mother did everything for me. She checked my blood sugar. Crafting meals and snacks that hit all the recommended marks plus the careful calculation and administration of insulin was a full-time job. My mother also took care of ordering insulin and scheduling doctor’s appointments, among a host of other things.

But when I entered my teen years, I was grappling with the hormones and authority-bucking nature of any teen while also trying to take ownership of my chronic illness. It was up to me to make strategic and sound food choices and to make sure my blood sugars were checked regularly.

How did my family and I make changes incrementally so that I could go from “passive” to “active” in my diabetes care?

Strategies That Helped

“Want to drive? Check before you get behind the wheel.” When I was preparing to get my license, it was 1995 and glucose meters were able to provide a memory bank of checked glucose numbers. A condition my parents set for earning my license was that I had to check every time I got behind the wheel, and straying from that course meant I couldn’t drive. And I wanted to drive SO VERY MUCH that I was willing to do anything to earn that independence. As a result, I checked my blood sugar constantly. (And also offered to go pick up milk anytime we needed it, even twice a day, if necessary.) This habit has served me well into my adult life, only now, with the advancement of continuous glucose monitoring, I check my CGM graph before I drive.

“I’d scroll through your glucose meter memory to make sure that you had checked a few times while you were out,” my mother recently admitted. “And if I saw your friends’ parents in the store or something, I’d casually ask them, ‘Hey, the kids were at your house the other night, right?’ just to confirm. I trusted you, but I was also a little sneaky, just in case you were being a little sneaky.” (And I loved that she did this, because it was her quiet way of checking up on me, instead of turning the floodlights of scrutiny on me.)

School allowed me to flex my independence. As a small child, my mother and the school nurse worked together to watch my blood sugars throughout the school day (this was back in the good old days when every school had a full-time school nurse). In middle and high school, I took ownership of my blood sugar checks and insulin dosing decisions in line with what we did at home. Managing my own numbers at school helped me later – those eight hours prepared me for being away at college. Thankfully, I didn’t experience much diabetes-related distress in grade school; college was a different story (more on that in a few).

I saw my clinicians on my own. When I was a teenager, my mother started splitting the appointments with my endocrinologist with me. We’d go in as a team for half of the appointment and then she’d step out for part of it. This allowed me to stretch my own wings, raising any concerns I had without worrying what my parents would think. This was especially helpful when I was considering becoming sexually active, because it allowed me to have honest conversations about risks, prevention, and sexual health with my doctor, helping me make informed decisions as a young adult.

Seek help without shame. When my parents divorced when I was 20, my overall health took a swift and confusing nosedive, and my diabetes was no exception. During this emotionally loaded time, my parents encouraged me to seek help from a very skilled psychologist who specialized in type 1 diabetes, and her intervention – even the act of being able to talk about my parents’ situation to a neutral, third party helped me make my way back towards caring about my disease. (This interaction proved to me that my emotional and mental health needed as much support as my physical health, a realization that served me well when I experienced postpartum anxiety after the birth of my son.)

Diabetes was not an excuse in my household. Diabetes wasn’t a reason for talking back to my parents or being late for curfew. It wasn’t a “get out of jail free” card for being a jerk to people. I was sometimes punished for diabetes-related things, like lying about my blood sugars or not checking when I said I would. A tip for parents of children with diabetes? Mine never punished me for the blood sugar result itself, but the lies related to it? Yessir.

And while I did not like being held to a standard that no one else in my family had to manage, I realize that my parents made diabetes something I was taught to take responsibility for, and not something to use an excuse. Now, I appreciate that diabetes was included by my parents on my list of “chores” because that put diabetes management into a silo of non-negotiable, accept-it-and-keep-at-it things.

And I wasn’t alone. Early on, my family sent me to diabetes camp, allowing me to connect with other kids who had diabetes and who understood what it was like to feel like “the odd man out.” They found out about the diabetes camp closest to me, Clara Barton Camp, from my endocrinologist at the Joslin Clinic. (Today, you can Google “diabetes camps” and find dozens of them, or see diabetescamps.org.) Finding my peers, especially at an early age, showed me that diabetes wasn’t rare and wouldn’t hold me back, and for the moments when I felt overwhelmed and isolated, I had my diabetes camp friends as an emotional boost.

Find What Motivates You

My sources of diabetes-related motivation were directly related to my desire for independence. My mom confirmed this for me:

“You wanted to take things over – not just checking your blood sugar and doing your own shots, but making decisions based on your numbers. You wanted to do it on your own because you preferred to be with your friends instead of having your mother hover over you.” She paused and laughed. “And the only way to make me stop hovering was for you to be responsible.”

Diabetes requires a lot of attention and doesn’t leave much room for slacking off. I say this with a little bit of frustration because I’d love, love to spend a few days completely ignoring my diabetes management, just to have a breather from all of its needs. But truly living well includes caring, actively, about my diabetes every day. The imperfect-but-real-life lessons my parents taught me as I grew up with this disease help me face it with renewed determination every day.

This article is a part of a series to support adolescents with diabetes funded in part by the Ella Fitzgerald Charitable Foundation.